From August 4th through September 5th, Members of Congress will be in their home districts. It is during this time we will be scheduling meetings for rare disease advocates. On July 8th & July 22nd we have webinars scheduled that will assist advocates in the process.

Participate Remotely in In-District Lobby Days This Summer

Please join the more than 230 advocates who are meeting with their federal legislators during August recess by contacting your Members of Congress. It is easy to participate remotely, and you can do it on your own timeframe!

First, check out the action alerts on our website. It only takes a few minutes to enter your address and send a message to your legislators. Current alerts include:

  • The Alliance for a Stronger FDA encourages advocates to request robust appropriations for the Food and Drug Administration (FDA) to ensure the Agency has the resources it needs to recruit and retain qualified staff and efficiently oversee the review of medical products. Click here to take action.
  • The EveryLife Foundation for Rare Diseases asks advocates to urge their legislators to co-sponsor the OPEN ACT (Orphan Product Extensions Now, Accelerating Cures and Treatments; HR 1223/S 1509) which has the potential to double the number of rare disease treatments approved by FDA. Click here to take action.
  • RDLA is working to grow the Rare Disease Congressional Caucus, a forum for Members of Congress to voice constituent concerns, collaborate on ideas, facilitate conversations between the medical and patient community and build support for legislation that will improve the lives of people with rare diseases. Click here to invite your legislators to join the bipartisan Caucus.

Then, if there is not an action alert for your legislative priority or if you want to do more than send an email, call the United States Capitol switchboard at (202) 224-3121 to be connected to the office of your Representative or Senators. Ask to speak with the Legislative Assistant who handles healthcare or a leave message with your “ask” as well as your contact information. The resources on the In-District Lobby Day webpage can help you prepare for your calls.

Participating in In-District Lobby Days in-person or remotely will help you build relationships with key staff members in your legislators’ offices, and ensure that they are aware of the impact of rare disease on local communities.

Trump Administration Releases Fiscal Year 2018 Budget Proposal

The President’s budget has dominated headlines since it was released yesterday, prompting concerns from many in the healthcare sector and questions among advocates about what it means. You can find the budget and supplemental materials here.

Federal Budget Process

This two minute video from AAAS explains the long process of creating and passing the federal budget. While the President makes a recommendation, it is up to Congress to pass funding bills. It is important for rare disease advocates to contact their legislators to request funding for the federal programs they support.

 Funding for National Institutes of Health (NIH)

The proposed budget would reduce funding for NIH by $5.8 billion. Congress recently passed a budget with an increase in NIH funding for the remainder of FY2017 despite the President’s call for a reduction, and there is bipartisan support for biomedical research funding. Many health advocacy groups voiced opposition to the proposed cut, as did the Chairman of the House Appropriations subcommittee that oversees health.

The drastic cuts in the Administration’s 2018 budget for the National Institutes of Health (NIH) are a significant blow to medical research and the patients who depend on it.” –United for Medical Research

Steep funding cuts for the federal health agencies are counterproductive at a time when innovative research is moving us closer to identifying solutions for rare diseases, new prevention strategies to protect Americans from deadly and costly conditions, advances in gene therapy, new technologies for understanding the brain, and treatments that harness the ability of our immune system to fight cancer.” – Research!America 

Funding for Food and Drug Administration

The Administration’s proposed budget would cut funding for FDA by $871 million and increase the amount of user fees. The user fee agreements between FDA and industry were finalized last year and the reauthorization process is underway in both the House and the Senate. The user fee agreements must be reauthorized by July 31st or the FDA must begin to notify the staff who review new medicines ad devices of potential layoffs.

We are concerned that should the FDA, as a consequence of this proposed budget shift, become significantly underfunded, the agency will have to choose among important public health priorities. Beyond the needed investment in FDA’s core functions, sufficient funding is necessary to spur innovation and provide critical oversight initiatives for drugs, biologics, and food.” – Muscular Dystrophy Association

Funding for Other Health Programs of Interest to Rare Disease Community

The budget also includes a cut of nearly 20% for the Children’s Health Insurance Program (CHIP) as well as cuts to Medicaid. A speaker from the American Academy of Pediatrics explained the importance of both programs at the Legislative Conference during Rare Disease Week on Capitol Hill earlier this year. You can access the video and slides here.

What You Can Do to Impact the Budget

To start, call or write your legislators to ask them to support funding for the federal programs that are most important to you. You can find their contact information here.

You can also participate in In-District Lobby Days during the summer Congressional recess from August 7th through September 6th.  When you register, you can specify when you are available and how far you can travel.  We’ll schedule meetings for you in the local offices of your Representative and Senators based on that information, and hold a webinar on July 28th to help you prepare.

EveryLife Foundation and Global Genes Unite to Present RARE on the Road in Atlanta, Kansas City and Portland

The EveryLife Foundation and Global Genes are joining together to host a series of RARE on the Road events this summer to educate rare disease patients, caregivers and other advocates in an interactive and engaging environment.

Building on the successful regional Legislative Conferences hosted by Rare Disease Legislative Advocates, the RARE on the Road events will highlight topics from capacity building to a patient’s role in drug development, including a hands-on workshop and networking lunch. These FREE regional events will help advocates learn, grow and become independent activists for their rare disease community. The general agenda for all three events is available here.

Registration is available by clicking the links below. Each event will run from 8:30am through 4:30pm.

Saturday, May 13th, 2017: Loudermilk Conference Center, Atlanta, GA

Monday, June 5th, 2017: Kauffman Foundation Conference Center, Kansas City, MO

Saturday, July 15th, 2017: Shriners Hospital for Children, Portland, OR

A limited number of $100 travel scholarships are available for rare disease patients and caregivers who otherwise would not be able to attend. Applications are available online and are due one month before each event, except for applications for a scholarship to RARE on the Road in Atlanta which are due by April 20th.

You can help spread the word by sharing the flyer (available here) with your community.

Join Us to Ensure the Rare Disease Community is Heard This Summer

During the summer recess, Members of Congress return to their home states to hear from constituents and attend community events.  Meeting with them during this time is a critical opportunity for rare disease advocates to build relationships, educate them on key legislative needs and follow-up on requests made during Rare Disease Week on Capitol Hill or phone calls or emails about legislative issues since then.

As a FREE service to the rare disease community, Rare Disease Legislative Advocates (RDLA) will set-up a meeting for you and fellow advocates at your convenience. Any rare disease advocate is encouraged to join us for In-District Lobby Days, held from July 18th to September 5th.  Registration is free and available online through Friday, July 15thYou can specify when you are available during the summer recess and how far you are willing to travel for a meeting.

This is a critical juncture for our community.  Although the 21st Century Cures Act passed the House of Representatives with broad bipartisan support last July, the Senate has yet to pass the companion legislation.  In the current partisan environment in Washington, it is important for Members of Congress to hear first-hand how united the American public is on the subject of medical innovation.  A recent poll found that 78% of Americans think Congress should prioritize fostering medical innovations, with an emphasis on finding cures for diseases that still lack treatments.  By joining us for In-District Lobby Days, you can urge your Senators and Representatives to support 21st Century Cures and advocate for other legislation benefiting our community.

To register for In-District Lobby Days, please click HERE.  RDLA will use the information you provided to schedule meetings for you, and help you prepare by providing key background materials and hosting a preparatory webinar to be held on July 13th.

It is up to each of us to ensure the voices of rare disease patients and caregivers are heard in Washington.  Please help us tell Congress loud and clear:  WE NEED CURES NOW!

Nominations for Fifth Annual RareVoice Awards Due by July 31st

Do you know anyone who has gone above and beyond to become a rare disease policy leader or advocate in a state or in our nation? Rare Disease Legislative Advocates (RDLA) is seeking nominations for the RareVoice Awards to be given on November 16th in Washington, DC.

Nomination categories include:

Congressional Staff

Has a staff member of a member of the U.S. House, Senate or Congressional committee been instrumental in helping to create and/or advance legislation that benefits the rare disease community?

Government Agency Staff

Do you know a government agency staff member who has gone out of his or her to listen to rare disease patients and then taken action to benefit the community?

Patient Advocate – Federal Level Advocacy

Do you know an advocate or organization that has worked with Congress or federal agencies to spearhead change on behalf of the rare disease community?

Patient Advocate – State Level Advocacy

Do you know an advocate or organization that has crusaded on the state level to support and advance rare disease legislation or regulatory reform?

RareVoice Award nominations are open to the public. Winners will be selected by an independent committee composed of representatives from the rare disease community including previous RareVoice winners.

To nominate a rare disease champion, please click HERE. Nominations close on July 31st, 2016.

The winners will be announced LIVE at the fifth annual RareVoice Awards ceremony on November 16that the Arena Stage in Washington, DC and will receive the coveted Abbey award.

The award is named after Abbey Meyers, the founder of the National Organization for Rare Disorders (NORD), and represents the “rare voice” speaking on behalf of patients, especially children, who might not otherwise be heard. The Abbey statue was commissioned for the RareVoice Awards from the renowned sculptor Nobe, who crafts each statue by hand in bronze.

Rare Disease Legislative Advocates’ North-East Conference

 

Monday, July 20, 2015

Stanley Bergen Building, Rutgers University, Newark, NJ

Rare disease patient advocates and other stakeholders from the rare disease community came together on Monday, July 20th, 2015 in Newark, NJ for our inaugural North-East Legislative Conference. The goal of our new regional legislative conferences was to update advocates about important legislation advancing through Congress and to prepare them to meet with their Representatives during August Recess.
This year Congress is working on legislation that will have a huge impact on drug development and approval, and as a community we must join together to ensure the legislation benefits rare disease patients and is passed in both the House and the Senate.

 

 

This event was a great success view photos here:
RDLA-NEConf-talking rare diseases
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RDLA-NEConf-pallone in audienceRDLA-NEConf-lanceRDLA-NEConf-lance advocatesRDLA-NEConf-juliapalloneschillionsRDLA-NEConf-eatingRDLA-NEConf-dvocacy panelRDLA-NEConf-andy and advocatesDean P NE confNE Conf hinj
Pallone speaking Jill Wood Rutgers dean
Mike Illions thumbs up
Co-Hosted by: 

 

Thank you to our sponsors:NJ Leg Conf Logo Mashup 7.13.3

In-District Lobby Days

One of the most important parts of being a rare disease advocate is building relationships with your Members of Congress, your state and local legislators, and other advocates in your community. Click below to register for RDLA’s In-District Lobby Days

For help and questions contact Andy Russell @ 415 884-0223, arussell@everylifefoundation.org

 July 11th Deadline to Register to Participate Read more